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Oliver’s Story

Hope is the thing with feathers
That perches in the soul
And sings the tune without the words
And never stops at all.

- Emily Dickinson



On February 25th 2011, we took Oliver to the ER for what we thought were health issues related to constipation. After a bevy of tests, the doctors found a sacrococcygeal teratoma (which is a type of "germ cell tumor") growing from his tailbone into his abdominal cavity. The tumor was impacting his bladder, causing his belly distention and lots of discomfort. He was immediately transferred to the Pediatric Oncology unit at UNC's Children's Hospital. A few days later, Oliver underwent biopsy surgery to confirm the type of tumor and its stage of development, which the doctors determined was "stage 3". Oliver's tumor was malignant but had not metastasized.

Oliver underwent the standard protocol to treat his type of cancer, which was 4 rounds of chemotherapy (starting 3/4/2011). Each round took 5 days with a 2 week break in-between. After 4 rounds, the tumor shrunk in size by half. In early June '11, Oliver had major surgery where the surgeon removed all he (safely) could but the pathology report confirmed residual cancerous cells. So surgery was followed by 2 more rounds of chemo in the hopes that would kill what was leftover. However, after two months off treatment, Oliver's AFP level (tumor marker) started to rise again and scans confirmed regrowth.

After much despair and sadness, we regrouped and started on "Plan B." Oliver's oncologist selected a new chemo cocktail this time (Taxol, Carboplatin, Ifosfamide). Oliver completed two rounds and the tumor showed a really good response. Then on December 12th, Oliver underwent another major surgery. This time we went to Sloan-Kettering in New York, placing Oliver in the hands of some of the best solid tumor surgeons in the world. The team had to remove the bottom three joints of his sacrum as well as some rectum in order to get the tumor out "en bloc." The surgery, which lasted 12 hours, was a big success with clean margins all around. Next Oliver underwent two more rounds of chemotherapy in January '12 to kill any lingering cancer cells. Now we are in the watch-and-wait phase where Oliver gets regular scans & blood tests and we pray for NED (no evidence of disease.)

Oliver has a world-wide army of family & friends that surround him with love (in person & in spirit). He is an amazingly strong and resilient little boy, and we are committed to doing WHATEVER it takes to help him triumph over this horrible disease.

Latest Journal Update

Clinic Visit and Lab Results

Yesterday was that time of year again, the nail-biting trip to the clinic to get Oliver's blood counts and check-in with his oncologist. Oliver had a snow day from school so it worked out that we were all able to travel over with Oliver. It was very great to see Oliver play with a new level of toys in the playroom in clinic, moving up from toys on the floor to card games and connect four with other patients. 

We saw a new oncology fellow who made Oliver laugh a few times through tickling him during her checkup. We had a great conversation with her about his current status and things we should look into over the next year for Oliver, including an appointment with nephrology to keep an eye on his kidney function, which was affected by chemo. We also were able to see Dr. Davis, Oliver's oncologist who was impressed with Oliver's growth and activity level. 

Oliver did great with all parts of the checkup until it was time to get his blood drawl. He hid under the table and was very scared, thinking it would hurt. Considering he hasn't been to clinic in 6 months, this was practically new to him. 

But...the nurses were great in distracting him and giving him the 'poke' in his arm, which he exclaimed "THAT'S IT!?" So, in the end it didn't hurt at all and he powered right through it. 

Then first thing this morning, we received the results that Oliver's labs are stable (and some improvement in a few) along with an AFP of 1.5 which is "well within the normal range". This is huge news and for the first time since he ended treatment 3 years ago, Oliver will not have to go back to clinic for a whole year! While we will have a few other medical appointments for him through out the year, it is a huge relief to have this much time between clinic visits.

Oliver is doing great, learning lots in school and being an amazing big brother to Nora (who just turned 3 yesterday - Great Monday, right?). Attached is a photo of Oliver doing trapeze/silks at a recent birthday party in Downtown Raleigh.

Thank you to everyone for your continued support and love!

 

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Comments

18 Comments

Melanie Crawford
By Melanie Crawford
Wonderful news! So happy!
Laura Stephenson
By So happy for you, Laura Stephenson — last edited
What wonderful news!!! Thanks for the update.
More time between visits is something you always want to hear...before too long he will be back in the general populations statistics!
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mary emerson-smith
By mary emerson-smith — last edited
this is the kind of news that causes grandparents' spirits to soar!
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1 person hearted this
mary knowles
By mary knowles
Praise the Lord and thank you for these great blessings!

Prayers & Hugs,
Mary Kate Knowles (Franklin Floyd's Grandma)
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Diana smith
By Diana — last edited
Another great milestone! What a relief with such good reports and a year before the next big check. Oliver is just amazing!
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1 person hearted this
Susan McCaffrey
By Susan Stanley McCaffrey
Such wonderful news! So happy and thankful for all of you!
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1 person hearted this
Catherine Carver
By Catherine Carver
So happy to hear this#
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1 person hearted this
Franklin Floyd
By
Wonderful News...So glad to hear! I love the picture! What a little acrobat. Wow, hard to believe Nora is already 3...

Hugs,

Rebecca Floyd
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2 people hearted this
WANDRE ELKINS
By Wandre Elkins
Your happy entry today made my day!!!!! Wow, what an amazing boy he is---God has been so good and how thankful we are for all of the family-------enjoy every day of miracles.
Love, Wandre
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Laura Dunn
By Laura Dunn — last edited
FABULOUS!! Such great results, and next check up one full year away! Love sharing in the happy news .. thx, as always, for the super updates, Jed & Stacy!! :) LOVE from Auntie La
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